Is PMR possible with low markers?

[Grammy80]

Today I got a call from the rhuematologist's office telling me that my bloodwork came back and inflammatory markers are down to normal....NOW~~~~

I will learn exactly, I hope, what that means. Definitely feel better and do believe the vision I have in my right eye is a bit sharper. Here comes the but....I have some pain and symptoms that feel like PMR and when I have the opportunity to go out or have appointments, I am wiped out. Is PMR possible with low inflammatory markers?

Does taking a weekly injection of Actemra effect those markers? I'm content on 24mg of methylprednisolone.....but what will the Doc say? Have an appointment in the afternoon for treatment of a small leg ulcer....so you will all be in bed in the UK when I get home!

Sleep well my friends...catch you tomorrow!!

[SheffieldJane]

It simply means that the Pred is doing its job. It really tells us nothing about the underlying disease. Yes it is possible to have PMR with low inflammatory markers. I guess most of us do, on Pred. Actemra will work in tandem with Pred and if you are lucky, it may shorten the whole disease process. I would be alert for side effects though. There seems to be quite a positive buzz around it for us. You still need to pace your activities and get plenty of rest both mental and physical - no pushing the boundaries of what you can manage yet.

Good luck with the treatment of your leg ulcer. These things are very trying. I hope that you have a good doctor whom you trust. It has made all the difference ( along with this forum) to my PMR experience. Speak soon Marilyn, take great care of yourself. 🌷

[Grammy80 in reply to SheffieldJane]

Thanks, Jane! I'm sure hoping I can stay with the Actemra because intially it was not an option for me because I have had two stomach bleeds and have diverticulitis. I was tanked up on prednisone and then methylprednisolone for months...I was aware of the side effects but was willing to give it a shot (no pun intended)to keep my right eye. Finally, I have had normal bloodwork.

The wound clinic just about wrapped my left leg in a 'zinc + ?' cast like affair and then my right leg for good measure. So only sponge baths for me for a week 😏😣 ...be glad you are across the pond!!!

I will start my taper ..slowly...and we shall see. I'm so thankful to have you all with me💗💗

[PMRpro Ambassador]

Actemra works in a different way from pred and it is usual for the inflammatory markers to go down when on Actemra so they actually become of less significance in monitoring your condition. One top PMR/GCA specialist says she now pays far more attention to symptoms for her patients on Actemra/tocilizumab.

However - just because the markers are lower it does not mean that the disease process is not still going on. That applies whether you are on Actemra or not in fact - you can have normal level markers with active GCA and symptoms before you go onto pred, about 1 in 5 patients with GCA and PMR don't have markers outside the normal range, and you expect pred to also bring the markers back to normal range, often quite quickly.

There are at least 3 different mechanisms that cause GCA, you may have one or more active in your GCA. Pred has an effect on all of the inflammation they create but Actemra only works for one of them, the IL-6 production pathway, and has no effect on the others. Monoclonal antibodies are very specific about how they work. If your GCA is solely IL-6 mediated then Actemra will do a brilliant job and you will probably get off pred altogether, about half of patients do. If one of the other mechanisms is involved you may manage to reduce the pred dose a lot but not get off altogether. The same probably applies to PMR.

In terms of PMR 24mg of methylpred should be plenty to manage PMR symptoms - although 20mg Medrol didn't work as well for me as 15mg prednisone for some reason. Medrol just didn't agree with me at all - I had adverse effects with it that I hadn't experienced before on prednisolone - or since on prednisone.

[Marilyn1959 in reply to PMRpro]

I don't have GCA but am interested in the three different types. What are they and how is the difference diagnosed?

[PMRpro Ambassador in reply to Marilyn1959]

The end-result is the same: inflammation in the walls of the arteries which has signs of these giant cells that give it its name. It is the mechanism that causes the inflammation that differs, mostly T-cells are involved, sometimes B-cells are being found to be involved. And sorry, but the third I was thinking of completely escapes me at present!

Showing which is likely is a complex research project - not for diagnostic purposes.

[Grammy80 in reply to PMRpro]

Fantastic information...as I mentioned to Jane...Actemra was considered a non-starter for me because of my medical history. 124 mg of Prednisone for a little over a month (after 1000mg IV) had no effect on my disease. The methylpred did after a bit on 68mg per day...but still no real gain until recently. So I'm hoping the Actemra will be tolerated.

I will be starting to taper down....but he is looking at about 3-4 months to get me to 8 mg a day and we'll just have to see what happens. I sure have my fingers crossed....and a few other things. Thanks so very much....🌸🌸

[christine2715]

I have been taking actemra (tocilizumab) by injection - there is now an epi pen. First I took it weekly and slowly I have gone down to 5 weekly. I have been taking it for 2 1/2 years as I was on the trial. It has been marvellous for me and enabled reduction to 2 mg steroids with no side effects.

[Grammy80 in reply to christine2715]

Wow...thanks Christine!! How fantastic and brave that you were on the trial!!! Without Actemra I'd be lost. I started with the epi pen injecting every other week and now every week for almost two months. I just tapered on Thursday from 24mg methylpred to 16mg. I'm having a few jagged days but feel much better today than yesterday. I really don't know if it is the 8mg drop or 2 1/2 hours in the dental chair with the root canal...or both.

I signed documents a few years ago to donate my body to a medical school when I passed because of my curious brain most of all. Now, with GCA, I'm so happy I did.

A friend of mine here had RA and PMR and was diagnosed with GCA about 3 years ago. She was diagnosed in time and started on a prednisone regimen. She could not tolerate it after a year or so. Her Doctor started her on Actemra and just a few months ago she is beginning to taper off that.

🌸🌸

Have a great day~!